Care Pathways and Patient Stories

1. Care Pathways and Patient Stories Matthew Ellis Community Paediatrics Clinical Lead Emily Roberts Children’s Services Manager Barnardo’s

2. Community Children’s Health Partnership • A legal partnership between North Bristol NHS Trust and Barnardo’s • A service that is core value driven • An integration of community child health and CAMHS services into a single provider-employer Trust • Reduction of variance to reduce inequality of access • Clinical care pathway driven • Performance monitored via an Outcomes Framework

4. Pathway Group (clinical effectiveness committee) • Key Stakeholders; GP rep, health visitor, school nurse, Therapist, community paediatrician, mental health team, CYPS • Identify two pathway champions • They lead pathway design process in consultation with key stakeholders • Bring the draft to the Group

5. Pathway Checklist

6. Care Pathways • Impaired attention in the school age child • Developmental Delay in the preschool child • Impaired social communication • Motor Coordination Difficulties in school age • Urinary Continence • Vision Problems • Motor Disorders including Cerebral palsy • Learning Difficulties • Substance misuse in young people • Emotional and Behavioural difficulties in children • Complex mental health 5-12 year old pathway • Eating Disorders in young people

8. Semi structured interviews 1. Before meeting with the service What was life like for you before you came into contact with the service? 2. First meeting with the service What happened the first time you met with the service? 3. Further meetings with the service (within 18 weeks of referral from community staff) What happened during the time that you met with the service? 4. Ending with the service What happened when your meetings with the service ended? Patient stories‘How do you want a patient friendly version of the pathway?’

9. Ladder of Participation Increasing degree of participation Non-participation Adding own criteria to a job description and involved in short listing process Child-initiated and directed Service User feedback used to inform and plan future services Consulted and informed People are present for a photo shoot but have little idea of what it is all about decoration

10. Journeys • NICE V Service User • Experience • Identifying your subjects in • house and through other • settings – stakeholders? • Focus groups • Questionnaires • Face to face interviews

11. Findings – Eating Disorder Care Pathway I got the impression that they just wanted to shove a drug down her and feed her up without involving her and helping her with her mental health… you know they just feed them up and then they go down and that isn’t a solution” Parent “On my fourth visit to the GP he said ‘you have anorexia’ and I was really knocked back by it I went home and hid in my room for ages” Young Person

16. Barriers • Only the patient experiences the whole pathway • Initial buy in (80:20 rule) • Management involvement • Professional boundaries • Trust website/patient information branding

17. Implications for Practice • Participation is a potential vehicle for system wide change • Patient experience is helpful to inform ‘pathway’ design • Getting the voices of the YOUNG and PARENTS heard can be difficult • In the campaign to achieve service change genuine patient voices can provide leverage